Rectal adenocarcinoma low in rectum: Should I get a second opinion?

Posted by andrea1975 @andrea1975, May 27 12:18am

So I was diagnosed in january , with stage 3c rectal adenocarcinoma ( T3 N2 NO MISMATCH). The tumor is very very low in my rectum and tethered to apparently everything it can be tethered to. It last measured 6.1 cm pre radiation.
I was supposed to do chemo/ radiation but refused the chemo . I completed radiation on May 7.
I am now scheduled to meet with the surgeon on May 29th. I've already had my consult and he performed a 2nd sigmoidoscopy which is when he informed me that even if the radiation shrinks the tumor , an APR with permanent colostomy is unavoidable.
It took Me some time to come to grips with that but I think I'm okay with it . So I hadn't thought of a second opinion. But now as the surgery is getting closer , I'm confused ,scared ,and thinking maybe I should. It just seems to me , like really ,I don't think there's any other options. It is what it is . I think I'll be told the same thing by any surgeon I see. And this one is supposed to be really good. And a second opinion would just delay what needs to be done ASAP. So any advice would be great because the battle in my head is just more stress I don't need . ( I also suffer from severe borderline personality disorder and ADHD.) So when I say battle in my head , there's really a horrible war in my head. So thanks in advance for any insight.

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cjay | @cjay | May 27 10:49am

First of all, I’m sorry for what you’re going through. I k ow it all too well - and the unbelievable anxiety and worry that comes with it.
I was diagnosed last year with the same, T3N2. I had 5 courses of intense radiation, then surgery April 10, 2023 for a LAR. I went into a temporary ileostomy for 6 months, then had the ileostomy reversed at the end of September. I had FOLFOX chemotherapy from May to August, and returned to work December 1. Last month my cancer came back as a local recurrence on the back wall of my vagina. The tumor was never found by the many scans I had, or even a colonoscopy in February. It’s fast growing and very low, below my resection site. I was told the only surgery would be removing EVERYTHING, and going into a permanent colostomy. I refused that surgery and I am opting for chemotherapy again instead.
I just can not do a permanent colostomy. I had many many issues with my sensitive skin and the adhesive causing irritation and constant itching.
Is there a reason you opted out of chemo?
Go to your second opinion, and ask about any immunotherapy you may be eligible for. Also ask about proton beam therapy. I’ve just learned of this from a friend whose husband has been going with success.
https://www.floridaproton.org/
Keep advocating for yourself and get as many 2nd opinions as you want!

andrea1975 | @andrea1975 | May 27 5:00pm

In reply to @cjay "First of all, I’m sorry for what you’re going through. I k ow it all too..." + (show)

Thank you so much for responding. I tried Xeloda for 3 days ,did not tolerate it well . I don't do nausea well. To me it's poison. My mom had Hodgkins lymphoma. Was diagnosed when I was 12 ,she died when I was 17 from complications from the ABVD and MOPP . I watched chemo slowly and painfully kill my mom. When it came to me. I am a very active person who rides 4 wheelers and am outside all the time. I also have adhd so sitting still or being sick in bed all day I can't do. I told the doctors that this is about saving my life and if at any point the treatment jeopardizes that quality of life that I won't do it. So yeah after 3 days and as sick as I got I stopped.
Now the colostomy ,most people I talk to to about it said it's really not that bad. That I will still be able to do everything I do. The recovery from surgery will be the only down time which I imagine I'll be pretty medicated. So I've accepted it ,I think. The side effects from chemo are permanent alot of times. I had true beam radiation . Not sure if that's the same . I tolerated it beautifully. No side effects really at all accept being tired. Only issue is they checked my tumor markers last week and it went up. From 5.1 to 5.6. So did the radiation do nothing. It had to have done something because the awful bleeding has stopped completely. I am a smoker which apparently can make the tumor markers high anyways. I go in Wednesday to the surgeon and I'm sure he'll order new scans. Go from there. My tumor is so low you can feel it just laying your hand across my perineum. There's a little lump. Surgeon said it's the lowest he's ever seen .